It Happened To Me Contest Entry: My Son Was Born With A Rare Congenital Heart Defect

There are nights when I’m 
snuggling him before bed, and I can’t help but wonder how much time I’ll get with him.

Feb 13, 2013 at 11:00am | Leave a comment

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By Erin Engwell

Jonas Raymond Hilburn was born on a perfect Saturday, long before the sun rose at 4:25am on August 8th, 2009. 

He was the most beautiful thing I'd ever laid eyes on, and holding him brought me so much joy and relief that my first words to him were: "Hi little guy! We did it!" 
His father and I had absolutely no reason to think he had any health problems.  Little did we know we were about to embark on the emotional roller coaster of a lifetime.

Around 8:00am on Sunday, August 9th, a nurse came to take him to the nursery for one more round of check-ups. I kept busy checking Facebook, watching the morning news, and sending his father text message updates. He had been called into work, and I wanted to stay connected throughout the day. A doctor came in around 8:45am, stating that Jonas looked a little ashen, blue even.

He told me Jonas would be transferred to NICU, and put under an oxygen hood. I hadn't noticed anything wrong, and the doctor assured me it was probably just an infection that many mothers have and pass to their babies during delivery. Hours went by, and I struggled with whether to ask Jonas's dad to leave work. It could be such a minor thing, and I didn't want to overreact. He decided it was best to just come back to the hospital.

I called NICU to get an update, and a nurse told me they were going to check Jonas's heart. I didn't think much of it. If something were wrong, wouldn't it have been caught on the ultrasounds during my pregnancy?

Jonas's father finally arrived at the hospital, and NICU asked us to come up and speak with the cardiologist. 
That's when I knew something was seriously wrong. My own heart sank to the floor. 

I knew if the cardiologist wanted to speak with us directly, something was wrong with Jonas's heart.

We scrubbed up to enter NICU, and there was our son, lying under an oxygen hood. His tiny chest was rising up and down so rapidly, and he did indeed look pretty blue. 
I stroked his arm and leg, and talked to him while we waited to speak with cardiology.

She began by telling us that our hospital was not equipped to handle Jonas's condition, called Hypoplastic Left Heart Syndrome. It is a rare congenital heart defect that means he was born without a left ventricle. The symptoms are often not seen until 24 hours after birth.

We were floored. We both broke down in tears as she explained everything, drawing out a diagram, handing us paperwork detailing his condition, and answering our questions. We asked to see Jonas again. We cried long and hard, staring at our amazing little boy as they hooked him up to a ventilator to support his breathing. We talked about what it would be like for him, for us, and hugged and cried some more.

We decided to take lots of photos. We wanted to document all of this experience, so we could show our son when he got older exactly what he went through. 
Later that evening, our son was transferred to Miami Children's Hospital via helicopter.



Just four days after he was born, Jonas was scheduled for his first open heart surgery. About 5 hours went by, while we paced the floor and waited for updates. 



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Jonas hooked up to multiple types of medication to keep everything functioning, just out of surgery.




Surgery was a success, but this was only the beginning. We stayed in the hospital for 10 days while he recovered. I was not able to hold him for a week, and when I finally did, he was hooked up to tubes and monitors, medicine and oxygen. 



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The first several months were difficult. He was sick, often projectile vomiting multiple times per day. 
We had a couple visits to the emergency room for illness and dehydration, often staying overnight for a few days.


He became so ill in December, I took him back to Miami Children's Hospital and they scheduled his second open heart surgery, called the Glenn, for his 4-month birthday.

 After another 2-week hospital stay and recovery, we returned home and settled into a groove. This was almost 3 years ago, and those early days seem like a distant memory now.
Jonas has bi-annual visits to the cardiologist, where he receives an echocardiogram and an EKG.


He is a healthy and active little boy: curious, happy and extremely talkative. He is not developmentally delayed, and is actually advanced in some areas. 

He will have one more open heart surgery, called the Fontan procedure, to complete the re-routing of blood flow throughout his body. This will be sometime before his 5th birthday, depending on how he does with weight gain. (A constant challenge for kids with CHDs)



Next Thursday, we have his bi-annual check-up with the cardiologist. He has spent the last two weeks telling me the same thing he told last summer, prior to a hospital visit and catheterization: “I need to take a break.” He gets winded easily, and needs to sit down and rest his heart. This is not something I taught him; rather, his body tells him to take it easy and he listens.



With every check-up comes the fear that surgery will be scheduled. It’s inevitable.

 He will be likely be on some form of medication for the rest of his life, and may even need a heart transplant into adulthood. This is worst case scenario, and doesn't look like it will happen, but only time will tell. He is currently on 4 types of medication, 3 of which are taken every 12 hours. 



Though there are many days I don't even think about the fact that he has a congenital heart defect, I must be honest: Sometimes my mind wanders to dark places. I am part of several online support groups for families with CHD kids. I have seen so many families lose their precious angels before they even reach kindergarten. Some babies never come home from the hospital at all.

There are nights when I’m 
snuggling him before bed, and I can’t help but wonder how much time I’ll get with him. I try not to live like every moment could be the last, but it can be really difficult at times. Jonas is a very healthy child for having a heart condition. The reality is that complications could arise at any time. 

For now, I am trying my best to focus on raising him to be a loving, well-rounded person.  


So far, he's doing great at being the best version of himself he can be. What more could a parent ask for?

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Super Heart Hero Jonas, being silly on the playground.